Hello

Hi just wanted you to know I have read your post and I’m sorry that you find yourself in this situation.like you my diagnosis came out of the blue followed very quickly by a poor prognosis. I have no magic word that will answer your question or alleviate your anxiety but I can assure you that everyone on this site will sort of understand . Please keep in touch I get comfort from the many inspirational posts that are written here . As a very elderly aunt of mine says … one day at a time … best wishes Chris x 

Hello OldSalt

I'm sorry to read that the cervical cancer has not been cured, as you had hoped, and that your lymph node is now affected.

Having read your description of the surgeon's response, I wonder if it is worth your asking for a second opinion? Maybe another doctor would be willing to operate, especially as they have decided that you cannot have any more radiotherapy. You would have nothing to lose in asking for this...many people do!

Please don't give up hope that you can continue doing the things you enjoy, and have planned. If you push a little, it may galvanise your team!

I can relate to your uncertainty regarding the future, and I too wonder sometimes what will happen to me in terms of how the cancer will affect me. I haven't asked any medics, as I'm pretty sure no-one can predict this!

I have known from the outset of my diagnosis that my cancer is incurable, so I have had more than two years to come to terms with this. It does get easier to accept, in my experience. I now regard myself as 'living with' cancer, not 'dying from' it. It isn't always easy to keep calm about it all though, I must admit!

I hope you get some positive news about a treatment plan soon!

best wishes

Kate

Hi Chris, Thank you very much for your response and encouragement, much appreciated. I will try to remember the advice "one day at a time" thanks

Best wishes

OldSalt

Hi Candysmum - do I call you that or Kate?? Thank you very much for your response. I didn't mention on my first post that I was additionally told by the consultant (before our subsequent meeting this week when he told me the surgeon would not even consider performing surgery to remove the lymph node) that "surgery would be very difficult because it would mean cutting into scar tissue caused by the radiotherapy". so I had already been primed to be told it was risky. I just hadn't been ready to hear "too risky". I take on board your suggestion to ask for a second opinion - I must say the thought of doing that immediately frightened me, causing my terror of sounding ungrateful and making people angry for questioning/arguing with them to rise up. But this is life and death  - I just have a sort of reverence, awe and admiration for my consultant and could not imagine he might be wrong! Perhaps a situation where I have to face taking him off the pedestal i have him on. I wouldn't know where to start right now but will enquire with the Macmillan support staff at my hospital.

Thank you for your encouraging comments. It sounds very positive that you have found it easier to come to terms with your incurable diagnosis after two years. My reaction in the past couple of days has been to wonder if I may only have a few months - or a year - but also fear of becoming too gruesomely unwell and miserable and exhausted to function. I realise I have been panicking a bit and thank you and all the others who have sent me messages of support and help, it does help to settle the fear and start taking some practical steps such as exercising in the lead-up to treatments.

I will make enquiries about how to get a second opinion - and if - once I have been able to speak also to my specialist nurse.

Best wishes

OldSalt

Hi OldSalt

I can understand that you might be reluctant to ask for a second opinion, as you don't want to jeopardise the good relationship with your medical team. They will be quite used to patients asking for this though, and I doubt they would take it as a criticism. 

I don't think it's a case of them being 'wrong' about their decisions, it's just a question of how much risk is 'too much' risk. This is quite subjective, and another surgeon may have a different view.

In the end though, you can only be guided by the advice you are given, and do what you feel comfortable with.

I hope you are feeling less panicky now. Waiting for decisions, scans and treatments is very hard.

Your deciding to use your waiting time positively is great! The best thing to do. It does help to have distraction activities to lessen your anxieties.

I hope all goes well for you!

Kate or Candysmum, I don't mind!

Hi Oldsalt, I would agree with Kate and get a second opinion. I am sure your surgeon will understand why you need to be sure of what treatment you can and can't have, people do it all the time!

I hope the McMillan nurse can help you. The other thing to remember is that they are developing new drugs all the time and hopefully one will soon be available to help you!

Hi OldSalt I knew I still had cancer after major surgery but the kick in the nuts was it spread to liver and lungs and in my neck already which is incurable so just keeping them at bay and am blessed to not have to many side effects at present. Regarding getting second opinion it can't hurt to ask as it is your life. My brother in Law has anal cancer and they can't operate but saying that I was speaking to a customer of mine and he had a similar situation with a near impossible operation that a specialist surgeon undertook and removed all the cancer and this was 11 years ago , So there is always hope ,Stay positive All the Best Minmax 

I am sorry you find yourself here and that the lymph node is difficult to access. Living with the uncertainty of incurable cancer is awful, although it does become normal. The aim of treatments is usually to reduce symptoms whilst also maintaining quality of life, so it might well be possible to return to your artwork and writing. One of the challenges with stage 4 cancer is it’s in your blood and/or lymph system, so there’s no guarantee that surgery, even if it could be done, would be the end of it. Immunotherapy aims to get your immune system to work on the problem, and will do so systemically. Unfortunately the protocols for some cancers and immunotherapies require it to be served up with more chemo, but the chemo dose is likely to be a lot lower than you had before. 

As an example, I had Pembrolizumab (an immunotherapy) with NAB-Paclitaxel (a chemo) for triple negative breast cancer spread to my liver. The side effects from the chemo were less than when I had had Paclitaxel the previous year for my primary cancer. And the Pembro has put me into remission. 

Watch and wait is a good place to be. It sounds like you have very little cancer at the moment, and they will offer you options if/when that changes. 

Hi Kat

sorry for the delay in replying as I am quite overwhelmed at the moment but thank you very much for your response and feedback, it is very helpful to have more clarification. I need to correct my original statement about my stage o cervical cancer - I have remembered it was 3C1 as opposed to 4. Your comments as to the consultant not so much as being wrong but more a subjective view as to how much risk is considered too much risk is extremely helpful, thank you. I am taking my time reflecting on it all before taking the action to talk to someone.

Oldsalt

Hi anndanv/Annette

Thank you for your response and advice. I am pondering it all at the moment and not taking action yet as it is all rather overwhelming. As I have said elsewhere I need to correct my original statement in that my cervical cancer was 3C1 not 4. I appreciate the info and encouragement very much about the new drugs. Thank you!

Oldsalt